What We Know...
Through our following on social media, we surveyed 105 people to learn about their ON journey. We have found that the average length of time it takes to receive a diagnosis is 3.96 years and the average length of time of having ON (without finding relief) is 7.44 years. This delay in diagnosis and the years of suffering can severely impact one’s quality of life.
ON is often the result of a concussion/whiplash injury. If the specialists that cared for a patient early on recognized that a patient’s recovery from this type of injury isn’t following a traditional timeline, a diagnosis of ON, if appropriate, could be offered sooner. This could streamline what often becomes a very complicated and lengthy process and help save time, money, and avoid seeing another specialist, trying another medication, or trying another treatment that doesn’t work and sometimes makes the condition worse.
Something else we found interesting in our study was that neurologists/neurosurgeons only diagnosed 45.7% of people surveyed. We expected that a neurologist would be the primary person to diagnose this condition. The results reinforced the need for greater awareness, even in the most specialized areas of medicine.
The Occipital Neuralgia Foundation recently partnered with Patients Rising, a 501(c)(3) organization. Together, we conducted a survey to learn more about the unmet needs in the Occipital Neuralgia community. You can read about our findings here.
In the link above, you will find the current clinical trials being done for Occipital Neuralgia.
As described above, you can see the challenge in getting properly diagnosed. Unfortunately, the battle doesn't end there. There are only a limited number of treatments available to 'cure' the problem and most treatments work to reduce the pain, but not fix the underlying condition. If you click on the link above, you will be brought to the National Institute of Health. Here, you can view the current clinical trials for ON. There aren't many and the few on the list only provide temporary relief or no relief at all. There is a tremendous need for early identification and treatments that work for this condition in order to restore our quality of life!